The Friday I'll Never Forget!

April 15, 2019

I could write 5 updates for all that I've experienced this past week....but when I last blogged about turning the corner after SDR surgery and that I was beginning to feel like "I've got this" ....I guess I really meant it!

 

Progress has come in surprising and wonderful ways.

 

Most important, I am now free of joint pain in my feet --at rest AND when walking. If this was all I would gain from SDR, I would be the happiest person on the planet. This is huge for me because I cannot quantify for others how scary, limiting, draining, relentless or awful that pain was. Or how much it jeopardized my candidacy for SDR. I couldn't have managed that pain and kept walking much longer, so the fact that it's gone blows my mind...and changes my life fully. With that one alteration - so much becomes possible again.

 

I've also begun to feel more comfortable in these strange new legs of mine. Still using a walker at this stage (and likely for a long while to come to keep me safe while I build strength), I've begun being able to look UP and AROUND at my surroundings when walking inside (and hopefully outside soon, too!).

 

Again, something that may seem so simple for those without CP...but with spasticity, this was impossible for me before SDR. ALL of my energy was previously focused on watching my feet and the ground when walking, to try to prevent falls.

 

My entire life I've been poked fun at for being unaware of my surroundings....but I had no choice in this. Spasticity dictates so much in the body including vision, posture and focus when in motion, and spatial awareness too. Now that spasticity is gone? I truly am free to see the world around me in brand new ways. The best part? This happened automatically on Friday, and I didn't even realize it in the moment!

 

Not until I stopped walking - and saw my Aunt beaming - did I realize that I had been looking around at all of the beautiful artwork that fills the walls of the corridor to therapy at the Children's Centre I'm fortunate to visit each day. When my Aunt pointed this out to me with a beaming smile, and I registered what she had said, I teared up (happily). This isn't always automatic for me yet....but it happened and that blew my mind....again!

 

(And it was a happy surprise too, to realize that I'm also starting to walk less with my neck, where my upper body would also be so tight that I'd have such tension in my neck and shoulders - just to try and stay upright - that this would cause often daily migraines. They are now gone. We'll see if they stay away as we pick up my movement and exercise intensity...but for now? GAME-CHANGER!)

 

The happy tears weren't finished flowing on Friday though. Walking is tough and not pretty at the moment - and I'm entirely okay with that because this process isn't an immediate one for anyone, especially adults. This week, we've worked on steps with the walker (death grip status), to slightly less of a panic-stricken-grip... to trying quad canes with much frustration and minimal success. ...to walking with just MY single cane again -- in 5.....FIVE.... days. At just 20 days post-op.

 

(Now, full disclosure - the cane walking is heavily and verrrrrrry closely supervised, mind you - but the point is that I'm able to do it. This soon!) And when I went for a tentative and super slow stroll around the centre (therapist by my side and supporting me just slightly with a gait belt)....I just teared up. ...because on Tuesday of this past week I couldn't fathom getting back to that state until MONTHS from now. But I'm here (kinda-sorta-for-sure).... FOOT PAIN-FREE and I'm proud of that. Really freaking proud of that.

 

My walking still looks exactly as it did when I left --but "normalizing" that isn't the point of SDR for me at this stage (or potentially, ever). The point is that we've unlocked the door to improvement vs decline, I'm pain-free, new muscles are activating and gaining strength for the first time ever, and it's SO much easier to move and breathe and see and just BE in this body. These are gifts galore, and I'm in awe and couldn't be more grateful.

 

It'll be a good while til I can walk safely by myself again -- but I'm not looking to beat records. I'm happy to take this process one surprising, awe-filled step at a time. And in the meantime, I'm content to also wheel or walker myself wherever I need to be, too!

 

Having discovered that I can now also comfortably manage all dressing, self care and can also get in and out of the car earlier in the week (which is a couple of weeks ahead of what other adults have mentioned who've been through this!).....we capped off the "Friday I'll Never Forget" with a visit to the Gateway Arch that St Louis is famous for. It didn't disappoint! It's stunning, the grounds and gardens are beautiful --and there was so much to see and learn.

 

As we read, St Louis was aptly named the "Land of Opportunity" shortly after its establishment.

 

Many, many years later... if this past week is any indication for me personally....you bet that I can sure see why!

 

 

There are novels more that I could (and can't wait to) write but for now. ..know that all is well here in St Louis, and I'm starting to find my (brand new) stride. Life is good....the work continues....and my gratitude for this opportunity has no end. 💚💪🎉

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